Sunday, February 28, 2010

I am pleased to say that I figured out how to say/write "Androgen Insensitivity Syndrome" in Chinese:

"雄激素不敏感综合征"

This might not make a hill of difference to anyone reading, but as a Chinese-American who has not been able to yet become fully proficient in her parent's mother tongue, I was pretty pleased with myself for managing to figure it out based on Google and a Chinese dictionary.

I googled the term and there are a good number of hits, though I can't really read more than 10% of it. ;-) Wish I could, because I'd love to see what is going on in Chinese media and medicine about the condition. Anyone out there know of how the condition is perceived in the non-Western world?

Saturday, February 27, 2010

To date, I've "come out" about my AIS to a few dozen people. Reactions have ranged from very positive to pretty indifferent. None have really proven negative. Of course, there are segments of people I am intentionally avoiding (for now). High school classmates from my small, homogenous, Midwestern town for starters. Certain extended family members who I don't feel need to know just now.

I have told a few near-strangers recently. Not because I feel the need to disclose this information to everyone, but because the nonprofit I am a part of (an AIS support group) somehow came up in the context of a conversation. One of these near-strangers, who I had met at a networking event once before, and who I ran into coincidentally at a coffee shop weeks later, seemed pretty taken aback at first. I never would have told him, but he had asked what nonprofit group I was trying to help out, so I thought, "Why not?" and just blurted it out.

He seemed a bit shocked, and I could see him almost unconsciously scanning my face and body before saying, "Well, you could never tell by looking at you!" I was a bit taken aback by that myself for some reason, but then realized, he wasn't saying anything negative. He was probably trying to be somewhat positive. And what's more, he was processing some very unexpected news - which you certainly don't hear every day. And I was certainly nervous, just throwing out all the cards on the table like that to someone I barely knew.

He found the condition interesting, and asked a few follow-up questions. "Is it like Fragile X?" he asked. "Not exactly," I answered. Though I didn't really know what Fragile X was. "Though it is a trait sometimes passed through the X-chromosome. Though sometimes, like in my case, it seems to be spontaneous."

He seemed to want to know more, so I explained what I could about the condition, and how I had only just found out, having been lied to as a teenager. He was sympathetic, and also intrigued. I offered to send him some URLs to read up more on the condition. And he later did, asking one or two follow-up questions.

His reaction was interesting because it was the first time I've really seen someone processing the information in this way. Really wanting to know more and understand it. I wonder if us not knowing each other well gave him more freedom to look at it from a more scientific angle.

At any rate, the experience, while definitely positive, made me think more about ways to disclose this information to people. As well as the variation in reactions I could get - some that might feel negative. I think it's important for those of us who are intersex to realize that to some people this is big, confusing news, and their reactions are going to vary - possibly widely - and we won't always like them.

Rather than fear their reactions, or react in a knee-jerk way, perhaps it is our responsibility to be more informed and more forgiving. Sure, we don't "owe" anyone anything, but only compassion and understanding can breed compassion and understanding. Perhaps we as intersex folks have to be the bigger people.

What about you? How have you disclosed your intersex status? What reactions have you gotten? And in turn, how did you react?

Thursday, February 25, 2010

My apologies - it's been ages since my last post. I suppose part of it is because my focus on this condition ebbs and flows. AIS is a part of my makeup, and has made me who I am today, but it's not the only thing. Just as we are all a sum of many parts, and arguably, more than just a sum of them.

I guess that was a convoluted way to say I've had other things on my mind these days. ;-)

I've been busy these days - with the job search (I've been unemployed for over a year now), and with a divorce. Yes, the ever-supportive husband I mentioned in previous posts has decided he is done with our relationship. (Those of you who know me personally but don't know I author this blog will likely now know who I am. And yes, this is me. Only I change a few details throughout for anonynmity! ;-))

I mention this as I wonder if my discovery of my AIS was a factor in him falling out of love and wanting to end things. Supportive friends insist that it's not, but I guess the insecurity in me causes me to ask the question. Especially since he brought it up in one of our breakup chats. He suggested I wasn't producing the right hormones or pheromones to keep him interested. He still insists that learning I am 46,xy has nothing to do with his feelings for me, but I do wonder. If the discovery did affect his feelings, I would be a little upset. I don't think there's anything male about me physically. Heck, I went for a huge portion of my adult life not knowing anything was amiss myself, and I live with me every day!

In other news, I've changed the comment settings on this blog so now when anyone comments, I will be notified by email immediately. Before, I would go weeks or months not knowing someone had left a comment or question. This should happen no more! Thanks for all your great comments, observations, questions and support!!